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DBL%20Hendrix%20small.png College chemistry, 1983

Derek Lowe The 2002 Model

Dbl%20new%20portrait%20B%26W.png After 10 years of blogging. . .

Derek Lowe, an Arkansan by birth, got his BA from Hendrix College and his PhD in organic chemistry from Duke before spending time in Germany on a Humboldt Fellowship on his post-doc. He's worked for several major pharmaceutical companies since 1989 on drug discovery projects against schizophrenia, Alzheimer's, diabetes, osteoporosis and other diseases. To contact Derek email him directly: derekb.lowe@gmail.com Twitter: Dereklowe

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« Extortion, Retractions, And More | Main | Carl Icahn Going For Genzyme? »

January 7, 2010

Is XMRV the Cause of Chronic Fatigue Syndrome? Or Anything?

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Posted by Derek

Last fall it was reported that a large proportion of patients suffering from chronic fatigue syndrome also showed positive for a little-understood retrovirus (XMRV). This created a lot of understandable excitement for sufferers of a conditions that (although often ill-defined) seems to have some puzzling biology buried in it somewhere.

Well, let the fighting begin: a new paper in PLoS One has challenged this correlation. Groups from Imperial College and King's College have failed to detect any XMRV in a similar patient population:

. . .Unlike the study of Lombardi et al., we have failed to detect XMRV or closely related MRV proviral DNA sequences in any sample from CFS cases. . .Based on our molecular data, we do not share the conviction that XMRV may be a contributory factor in the pathogenesis of CFS, at least in the U.K.

Interestingly, XMRV has also been reported in tissue from prostate cancer patients, but recent studies in Germany and Ireland failed to replicate these results. Could we be looking at a geographic coincidence, a retroviral infection that's found in North America but not in Europe, and one whose connection with these diseases is either complex or nonexistent?

Note: as per a comment on this post, the Whittemore Peterson Institute is firing back, claiming that their original work is valid and that the London study has many significant differences. PDF of their release here.

Comments (94) + TrackBacks (0) | Category: Biological News | Cancer | Infectious Diseases


COMMENTS

1. sgsox on January 7, 2010 12:22 PM writes...

WPI immediately published a very strong worded press relaes, basically calling the new study a total rubbish.
http://www.wpinstitute.org/news/docs/WPI_Erlwein_010610.pdf

It should be noted that WPI is currently making/selling test for XMRV and may be a bit incensed...

Permalink to Comment

2. Sili on January 7, 2010 1:05 PM writes...

It's always fun to see that Big Quacka have worse ethics than Big Pharma.

You and ERV show up right next to eachother in my feed. Pretty damn fast you are.

Permalink to Comment

3. cynical1 on January 7, 2010 2:01 PM writes...

And you can just bet that this marks the start of yet another bitter academic fracas between all parties that will sideline the real issue - which just happens to be a ton of people who are really, really sick.

Here's an idea: Why didn't they just send their plasma samples to each other and see what they could figure out? Is that so hard? (I'll even buy the dry ice for them to ship it in!) And maybe, just maybe, it might have been wiser to do this BEFORE the war gets started.

But no.......

One of these groups has very likely screwed up (I seriously doubt a disparate etiology between continents)and I'll predict that they'll fight to the end of their careers defending their results. Do the words, 'Sorry, I was mistaken' ever pass over the lips (or across the keyboard) of scientists?

Researchers can be such wankers........Sorry, for some reason, I'm feeling more cynical than usual today. Maybe it's all those people that Merck and Pfizer are firing.

Permalink to Comment

4. arglebargle on January 7, 2010 4:49 PM writes...

This new study which did not find XMRV likely has problems with both their cohort selection and methodology. It looks like their selection criteria would actually exclude ME/CFS patients. People who are ill with ME/CFS have measurable abnormalities in a number of areas yet the study states "Patients in our CFS cohort had undergone medical screening to exclude detectable organic illness and met the CDC criteria for CFS.". in addition, the CDC criteria are very loose and set up to support Dr. Reeves of the CDC's contention that ME/CFS is totally psychological in nature. Seems like the fix is in WRT this study as the psych camp tries to protect their turf despite the weight of thousands of patients who have well documented physical illness.

Also, microbes do not respect international borders, especially in this age of high speed travel. XMRV was found in one prostate cancer case and one control in the following study.

J Clin Virol. 2008 Nov;43(3):277-83. Epub 2008 Sep 27.

Prevalence of human gammaretrovirus XMRV in sporadic prostate cancer.
Fischer N, Hellwinkel O, Schulz C, Chun FK, Huland H, Aepfelbacher M, Schlomm T.

Institute for Medical Microbiology and Virology, University Medical Center Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany. nfischer@uke.de

Permalink to Comment

5. Anonymous on January 7, 2010 5:21 PM writes...

It was pretty obvious that the initial study was non-specific and non-robust PCR amplification conditions. Its pretty funny that in their press release they claim that the new study is no good in part because of "use of a molecular plasmid control in water versus a positive blood sample."

That is like one of the most damning little sentences I've read in a while. The "positive blood sample" that they claim is the best positive control was only deemed positive by virtue of the same assay that it is supposed to be the positive control for. The initial study had no real positive control, and therefore was fatally flawed.

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6. Anonymous on January 7, 2010 5:22 PM writes...

It was pretty obvious that the initial study was non-specific and non-robust PCR amplification conditions. Its pretty funny that in their press release they claim that the new study is no good in part because of "use of a molecular plasmid control in water versus a positive blood sample."

That is like one of the most damning little sentences I've read in a while. The "positive blood sample" that they claim is the best positive control was only deemed positive by virtue of the same assay that it is supposed to be the positive control for. The initial study had no real positive control, and therefore was fatally flawed.

Permalink to Comment

7. Whittemore Peterson Institute on January 7, 2010 5:25 PM writes...

FOR IMMEDIATE RELEASE

Frankie Vigil
R&R Partners for
Whittemore Peterson Institute
775-336-4555
frankie.vigil@rrpartners.com

Official Statement from the Whittemore Peterson Institute Regarding UK Study

The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland Clinic, therefore it cannot be considered a replication study nor can the results claim to be anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results.

The scientific methods used by WPI are very exact and require specific techniques to ensure accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to replicate the WPI study, but also render the conclusions meaningless. These differences include, but are not limited to the following:

1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell culture;
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which were not validated by a clinical control.


The WPI study was published after six months of rigorous review and three independent lab confirmations, proving that contamination had not taken place and that infectious XMRV was present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria. In contrast, this latest study was published online after only three days of review. Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.

“Little is known about the prevalence of XMRV world-wide, much less the incidence of XMRV in ME/CFS or prostate cancer” emphasizes Dr. Judy Mikovits. “WPI and its NCI collaborators are actively engaged with international research teams to investigate these important questions.”

WPI does not recommend the use of anti-retroviral drugs that have yet to be proven to be effective in treating XMRV infection. However, several large pharmaceutical companies have expressed interest in developing anti-retroviral and immune modulating drugs that will effectively treat XMRV associated diseases.

WPI looks forward to the results of other scientific groups around the world, serious about replicating its scientific results, by using the same techniques as WPI and its collaborators. The fact that XMRV was detected in 67 percent of the CFS samples in the U.S. study determined a significant association between XMRV and CFS, demanding a much more serious inquiry by responsible health agencies around the world as to the cause of this debilitating disease.

-###-

Whittemore Peterson Institute
The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of the immune system and the nervous system, often results in lifelong disease and disability. The WPI is the first institute in the world dedicated to X associated neuro-immune disease (XAND), and other X associated diseases, integrating patient treatment, basic and clinical research and medical education.


Permalink to Comment

8. qetzal on January 7, 2010 6:14 PM writes...

I don't know who's right here, but WPI's press release seriously damages their credibility in my view. The tone is highly defensive, as if the Erlwein et al. was some kind of personal attack on them.

The PR lists a number of things that supposedly render Erlwein "meaningless." One of them (#4) is that "molecular plasmid control in water" was supposedly used as the positive control, instead of a positive control blood sample. In fact, the paper doesn't say whether the positive control was in water, buffer, spiked into patient DNA, or what. But in the comments on PLoS ONE, one of the authors confirms that the positive control WAS spiked into patient DNA. So that's at least one false accusation made by WPI's press release. I'm quite happy to believe that it was an error, not a deliberately false accusation, but it still suggests a willingness to make self-serving assumptions that aren't actually supported by the facts.

Finally, the very fact that WPI chose to respond by press release, instead of through normal scientific channels, makes me very skeptical of their motives.

Permalink to Comment

9. DCRogers on January 7, 2010 8:24 PM writes...

Since when is a reply to a scientific paper couched in legalistic, not scientific, terms ("These differences include, but are not limited to the following"), and released by an advertising/public relations agency ("R&R Partners is an integrated marketing communications firm that builds brand relationships across all audiences through such services as advertising, ...")?

If the lawyers left the room we might be able to watch an interesting discussion, but it's looking unlikely now that WPInstitute has lawyered up.

Permalink to Comment

10. KAti on January 7, 2010 8:27 PM writes...

The Wessley clan had a rushed, poorly designed study that did not follow the initial Science article protocol in their technique.

On need to ask, who benefits from that study?

All of the subjects were negative for XMRV. Don't you think it's a bit suspicious?

Their case definition is very questionable, and it is essential to use a VALID case definition for ME?CFS patients, like the canadian consensus.

LEt's compare apples with apples. Kids learn that really early.

Permalink to Comment

11. bbooooooya on January 7, 2010 8:34 PM writes...

This Whitmore institute is a joke: http://www.wpinstitute.org

Permalink to Comment

12. Bored on January 7, 2010 8:42 PM writes...

I agree with #9 DCRogers. Lawyering up is a sign that the Wizard doesn't want the curtain pulled back.

Permalink to Comment

13. Retread on January 7, 2010 8:56 PM writes...

I'm not sure it's kosher to republish a comment I made on your original post on XMRV, but here it is again.

"The WPI people are now saying that since the manuscript went in that further work has shown 98% of a 300-CFS-patient sample as positive for XMRV."

This ALMOST CERTAINLY DOES NOT PASS THE SMELL TEST. Few diagnostic criteria are 98% accurate (particularly those based on symptoms alone), so the group of 300 patients said to have CFS undoubtedly contains more than 2% who don't have the disorder (whatever CFS turns out to be) even though they have the symptoms.

However, classifying illnesses by symptom complex has a long and excellent history in medicine. Prior to the discovery of micro-organisms, infections were characterized by the type of fever they produced. Now we know that many distinct micro-organisms cause fever. Similarly, it is quite likely that there are multiple distinct causes of CFS (some of which might be one or more micro-organisms). It is very unlikely that 98% of CFS (whatever it is) is caused by one thing.

Permalink to Comment

14. qetzal on January 7, 2010 11:42 PM writes...

KAti asks:

On need to ask, who benefits from that study?

Right. Because only the people from the PLoS ONE study have any stake in this. Those folks over at WPI, they couldn't possibly have any bias right? After all, they work for an institute that "exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of the immune system." The "first institute in the world dedicated to X associated neuro-immune disease (XAND), and other X associated diseases, integrating patient treatment, basic and clinical research and medical education." The one claiming a major new discovery, where "several large pharmaceutical companies have expressed interest in developing anti-retroviral and immune modulating drugs that will effectively treat XMRV associated diseases."

Nope. No reason for possible bias there. No sir-ee.

Permalink to Comment

15. qetzal on January 7, 2010 11:50 PM writes...

Sorry for the double post, but on the question of who benefits, I now see that WPI has licensed out their XMRV test, in response to "an overwhelming response." (link).

So indeed, let's consider who benefits here.

Permalink to Comment

16. Advocatus Diaboli on January 8, 2010 1:58 AM writes...

How does cutting non-management jobs improve R&D output?
________________________________________________
Pfizer and Merck signal deep cuts in R&D groups

http://www.fiercebiotech.com/story/pfizer-and-merck-signal-deep-cuts-r-d-groups/2010-01-07

Pfizer and Merck have begun to spell out exactly where the axe will fall as they each absorb a big new acquisition into their organizations. According to Pharmalot, Pfizer has told New Jersey officials that 400 people at Wyeth's old Monmouth Junction research center are getting the pink slip at the end of this month. And Merck will eliminate 500 jobs--mostly sales and administrative positions--from Schering-Plough's old headquarters in Kenilworth.

These layoffs are just the beginning, of course. Both pharma companies are planning deep cuts to eradicate any overlaps with the companies that they are swallowing. And in another ominous note for Big Pharma's embattled R&D organizations, Merck CEO Dick Clark (photo) told an audience attending a Goldman Sachs event that the company has to look at "the number of research sites you need" post-merger.

Permalink to Comment

17. oregano on January 8, 2010 5:30 AM writes...

Quetzal, it WAS a personal attack on WPI. The British "researchers" specifically mentioned the WPI paper. In fact, this was a rushed, poorly designed "study" for the purpose of countering any thought that ME/CFS has an organic cause. Wesseley, who is a psychiatrist, has co-written hundreds of papers selling the idea that ME is nothing but depression and "illness beliefs". He is also paid a lot of money by drug companies that sell antidepressants. He and his cronies specifically INclude depressed people, and specficialy EXclude those who have testable, verifiable organic symptoms for ME from their very definition of it.

Permalink to Comment

18. blick on January 8, 2010 8:01 AM writes...

I do not understand all of the animosity being directed toward WPI. It strikes me as venomous and somewhat premature. I have been suffering from a chronic fatigue type of illness for three years. WPI is one of the only organizations committed to seriously investigating this mysterious malady which, in my case, has caused, at times, complete incapacitation. Adding insult to injury, doctors have remained ignorant, even intransigent, funneling debilitated patients to shrinks for talk therapy and Prozac. Any perceived conflict of interest with VIP DX's XMRV test (Dr. Lombardi heads up that lab, and it is the only US lab offering the test) is offset by the fact that WPI was founded by, and named after, a family with a daughter who is very sick with CFS. It seems obvious that financial gain is not a motive here.

Permalink to Comment

19. fromsgc on January 8, 2010 10:04 AM writes...

#18, Can not tell for anybody apart from myself, but I REALLY do not like the immediate prees-relese worded in a very offensive, even libel way. Tottaly disgusting. Regardless of what I thought before this story - and I still think viral infection may contribute to the CFS - I know have very grievious doubts about the motives and methods of WPI folk.

Permalink to Comment

20. blick on January 8, 2010 10:14 AM writes...

Well what do you suspect WPI's real motives are, then?

Permalink to Comment

21. Anonymous on January 8, 2010 10:41 AM writes...

#18, you are being too unequivocal in your dismissal of financial incentives as affecting this discussion -- as demonstrated by the hiring of a PR firm, hardly a typical act of a scientific lab.

But rather than going down the unscientific rat-hole of guessing at motives, I will simply note that the disparity in results are SO LARGE as to ensure that further independent follow-on work will easily I.D. which emperor is strutting around with no clothes.

Permalink to Comment

22. qetzal on January 8, 2010 10:43 AM writes...

oregano,

It was a scientific study published by scientific researchers. It may well be wrong, but calling them "researchers" (with scare quotes) isn't persuasive.

Of COURSE they mention the WPI study. That provides the entire context for doing their study. It would be unacceptable if they DIDN'T mention the study. If you think that's evidence of a personal attack, perhaps you're not familiar with the expectations of scientific publishing.

I won't attempt to argue whether Wessely and "his cronies" have a non-scientific bias against the XMRV hypothesis. I'll accept, for the sake of argument, that they may well have.

The point is that WPI also has a clear and obvious potential bias in favor of the XMRV hypothesis. They're already selling XMRV diagnostic testing, for FSM's sake! Sure, it's through a license to another company. But it turns out that Lombardi, who was first author on the the study claiming a link between XMRV & CFS, is not only a member of WPI. He's also the Director of Operations for VIP Dx, which is the company selling the XMRV testing! (Thanks to blick for pointing that out.)

So the allegations of possible bias clearly cut both ways.

Let me be clear that I don't know whether either, both, or neither groups' claims to date have been influenced by their non-scientific biases. But I submit neither does anyone else. Trying to make a case for either side by claiming the other side is biased is naive, at best.

Permalink to Comment

23. W4TC on January 8, 2010 10:53 AM writes...

This study from King's College would be laughable were it not for the very damaging and misleading agenda behind it.

First, the study by the WPI had a rigorous 6 month peer review prior to publication. This King's College "study" was published in a matter of days, and was not peer reviewed.

The methodology was also seriousy flawed. According to the Scientific Director of the CFIDS Association of America (formerly of the CDC):

"The blood was collected from CFS patients in different types of blood collection tubes.
The genomic DNA was extracted and purified using different techniques.

The amount of genomic DNA included in the amplification assay was different.

Different primer sequences were used that amplified different regions of the XMRV proviral DNA.

The conditions of the PCR amplification assay were different – from the numbers of cycles, to the type of polymerase used.

Should these differences affect an investigator’s ability to detect XMRV? To a microbiologist with experience handling samples and studying various infectious agents (as I am), these variances in procedure could make the difference between detecting XMRV or not."

This was not a replication study attempt. It was a fast ditched, extremely flawed effort of group of *psychiatrists* with an agenda to dismiss CFS as the real, serious and biophysical illness that it is. Would anyone have taken a replication study attmempt by a group of pyschiatrists (vs. microbiologists trained in virology) in the early days of HIV testing? Of course not.

This UK study is meaningless.

Permalink to Comment

24. blick on January 8, 2010 11:01 AM writes...

Let me be clear: I am indeed very concerned with the ethical issues surrounding the VIP Dx XMRV tests. CFS patients are among the most vulnerable and desperate (Lombardi and co. know this) and the $650 price tag for PCR and culture tests is unlikely to be covered by insurance. VIP is the only lab offering this test. They can basically charge whatever they want. Supposedly, profits are being put back into WPI. If there's not an actual conflict of interest, there clearly exists an appearance of one. I do have a problem with this. But I remain willing to give them the benefit of the doubt.

Permalink to Comment

25. John on January 8, 2010 11:28 AM writes...

Regarding several of the points brought up-

1. XMRV and prostate cancer. There have actually been two seperate studies which found an association between XMRV and prostate cancer- the original study by De Risi et al, as well as a recent study by Singh et al.

2. The fact that no XMRV whatsoever has found in negative studies. There have been two seperate studies which reported a roughly 4% prevalence in otherwise healthy controls as well as a Japanese Red Cross report of a 1.7% prevalence in Japanese blood donors, so for the two XMRV/prostate cancer(XMRV/PC) studies and this XMRV/CFS study to not find any XMRV whatsoever in now approaching 1000 patients is kind of odd.(0/589 German XMRV/PC study, 0/139 Irish XMRV/PC study, 0/186 XMRV/CFS study)

3. That the WPI is financially motivated to sell tests. The WPI is a non-profit institute. I believe the founders of the WPI, Annette and Harvey Whittemore, opened VIPdx(the company selling XMRV tests) as a for profit subsidiary, but have stated their intent to plug any and all profits back into CFS research and treatment at the WPI, due to a decades long pattern of ignorance and prejudice in regards to government funding of CFS research. The Whittemores have already donated millions of dollars of their own money to the WPI in order to find a cure for their daughter Andrea who has been sick with CFS for the past 20 years.

4. The methodological rigour of the original study vs. the methodology of this study. The original study was made by the peer reviewers of Science to go back and find and re-find XMRV by numerous different methods. It was also replicated in three seperate labs- 1)the WPI, 2)the Cleveland Clinic, and 3)the NCI.

Permalink to Comment

26. Mark Elliott on January 8, 2010 11:29 AM writes...

To suggest that VIPdx is only conducting XMRV tests to make money is incorrect - they have stated that any money they make will be invested in further research for developing better tests. They don't claim that the tests they have now are for anything other that research purposes. Red Labs (in Belgium, I think) will soon be doing the same tests.

Three labs duplicated the same results, which is why it was published in "Science", the most prestigious scientific publication there is. In addition to the Whittimore Peterson Institute these labs are at the National Cancer Institute and the Cleveland Clinic.

The Wessely study is fraudulent when it claims to show that there is no XMRV in Europe, WPI tested 500 samples from the UK and got the same results as they got with their US samples. Wessely is to legitimate research what Fox News is to the New York Times.

Permalink to Comment

27. Anonymous on January 8, 2010 11:35 AM writes...

John -- Excellent points. Thank you for making them.

Permalink to Comment

28. sgcox on January 8, 2010 1:16 PM writes...

Sorry guys, but UK staudy - all the lab work, was done by very profeccional people in Jefferiss Research Trust Laboratories, Section of Infectious Diseases, Wright-Fleming Institute, Faculty of Medicine, Imperial College London. Just check pubmed for articles by first and second authors to see that they know what they are doing.
Just stop this nonsence that if it was published in Science by some american authors makes it certain and final truth. Sheesh !

Permalink to Comment

29. Siaz on January 8, 2010 4:08 PM writes...

sgcox... As far as I can see, no one here said that just because it was in Science or done by American researchers that it was certain and final truth. Not even the WPI is saying it's most certainly causal. They are only saying it's possible XMRV may play a role, given the findings. What people here are saying is that their study methods were much more well developed and rigorously tested than the UK study. Don't forget the Cleveland Clinic and National Cancer Institute (separate labs) also confirmed their results.

I'm looking forward to seeing valid replication studies that use the most accurate testing methods possible, and are extensively peer reviewed prior to publication. In my opinion, the UK study did neither of these things.

Permalink to Comment

30. sgcox on January 8, 2010 5:16 PM writes...

Well, I was just very irritated by W4TC, John and Mark comments which implied the infallability of Science paper authored by 3 American labs.
I do not have any connections whatsoever with UK labs involved but I resent the blatant and vicious attack by WPI associates, sympthatizers and people just taking sides.
I also resent selling $560 kit (and pocketing money as a director of the company based solely on your controverial paper)to sick people which will not benefit whatsover from it, not even placebo effect !

I just dont like this whole WPI reaction and business angle. Just does't feel right for me, sorry.

Permalink to Comment

31. Petra on January 8, 2010 7:14 PM writes...

All politics aside, because of the similar discrepancy between the US & European prostate cancer XMRV studies, seems to me the only two possibilities are A)XMRV occurs in the US but not in Europe, or B)The European lab techniques are unable to detect it. No? Or, I suppose, C)that the American (and Japanese) lab techniques are faulty and XMRV does not occur in humans at all?

Permalink to Comment

32. Hip on January 8, 2010 9:10 PM writes...

Note that: One of the co-authors of this study, Simon Wessely, has a vested interest in the outcome of such virus studies. Simon has staked his entire academic career on the idea that diseases like chronic fatigue syndrome / myalgic encephalomyelitis are caused by purely psychological factors.

Therefore Simon Wessely would be the last person you would want in a study like this. I wonder just how hard he looked for this XMRV virus.

Ever heard of confirmation bias?

Permalink to Comment

33. Hip on January 8, 2010 9:24 PM writes...

>> ALSO, Simon Wessely and company often use a different set of criteria to select the patients for their "CFS" studies (such as the Oxford Criteria). These selection criteria are set up so as to include lots of people that are just depressed, who do not have CFS at all.

As a consequence, it is not surprising many studies, based on the Oxford Criteria or similar, find that patients do not have XMRV: they studied the wrong people!

In other words, when Simon Wessely says "CFS", he actually is talking about "depression". Wessely loves to play language games, and frequently bends the definition of terms. You would be surprised how easily this fools people. Wessely has his own agenda.

The original XMRV research at the Whittemore Peterson Institute used the Canadian Consensus definition of CFS/ME, which most researcher say is the definition that everyone should abide by. The advantage of the Canadian criteria is that they actually select CFS patients, and not just a ragbag of various people that have depression, and other disorders.

Permalink to Comment

34. qetzal on January 8, 2010 10:01 PM writes...

Hip,

Have you considered that Lombardi et al. & WPI stand to make their careers on XMRV?

You people who think bias can only go in one direction are either foolish or deluded.

Permalink to Comment

35. retread on January 8, 2010 10:30 PM writes...

Comments about motivation are probably relevant at this point. But the presence or absence of XMRV nucleotide sequences is about as objective a finding as one could hope for.

A fairly simple solution would be to have a third group obtain samples from a new set of CFS patients (with the criteria used for diagnosis clearly stated) along with plenty of normal controls l, send them blinded to both sets of labs and see what happens (along with running the test themselves). Hopefully something like this is already in the works.

Remember a diagnostic test that is 99% accurate for condition X will produce false positives 50% of the time if the prevalence of condition X is 1%. Testing only CFS patients is not a good idea presently, but certainly was a decent place to start. Time to move on.

My guess is that the original XMRV work won't hold up. As always, there is no substitute for data.

Permalink to Comment

36. Mark Elliott on January 9, 2010 1:20 AM writes...

WPI tested both people with CFS and age and sex matched controls, 3.7% of whom tested positive. Read the study!

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37. Julie on January 9, 2010 9:06 AM writes...

A replication study should surely do just that...replicate a study. If the study was not fully replicated then surely it should not be included within the research project. There are replication studies taking place all around the world and the results should be due in towards the middle of the year, surely only then are we in a position to judge the work carried out by WPI. For me I am just so grateful that someone is attempting to get to the bottom of this disabling illness and I will support anyone who is truthfully trying to do that...one thing I am positive of though, that it is not phsychologically based and having a pschiatrist championing the cause for CFS/ME in the UK is like having a plumber in charge of a housing development (no disrepect to plumbers!).

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38. Siaz on January 9, 2010 9:07 AM writes...

First, my apologies my previous message got posted 4x. I hope the owner of this site can delete the duplicates. I kept getting error messages when I hit "send."

As for the WPI, I thought their press release was professional and respectful, and simply stated the facts --that the UK study methodology was flawed.

And as for their motives... the WPI, a non profit organization, was established by a doctor studying CFS for 20 years, and by a set of parents who have a daughter with severe ME/CFS. It was reported in the NY Times that she now suffers from seizures as a result of the disease. The WPI's only agenda is to try to help people with this hugely serious and debilitating disease to get their lives back.

Don't forget, the WPI compared CFS patients (who met both the Fukunda AND Canadian Definition) as well as healthy controls. 67% of those with CFS had the virus, vs. about 4% of controls. It's extremely important when studying CFS that the patient population actually *has* CFS (ie, meets the criteria for diagnosis, most preferably by using the strict Canadian Case Definition).

Also, the study in Science was not just the WPI. The study was duplicated by labs at the Cleveland Clinic and the National Cancer Institute.

In my opinion, the Science study was a supieror study all around. I look forward to more labs using the same high standard testing methods, and the same guidelines for patient population. In other words, I look forward to real replication studies.

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39. Kati on January 9, 2010 10:27 AM writes...

Chronic fatigue syndrome patients (I hate the name of this disease, it is derogatory and insulting) are ridiculed day after day after day for having an illness supposedly with no biological markors. The CDC and governments especially in the IUK have traditionally made a point to say that it's all in our head, a psychiatric disease. The UK study has been directed by Simon Wessley who is a psychiatrist. This study has been done quickly, with techniques that were not the same as WPI in order to find XMRV.

It is time for all doctors to become familiar with this devastating illness and start to treat their patients as being physically ill and start finding the markors, because there are many if you start looking. I would like to command the Whittemore-Peterson Institute's efforts into self funding a solid research that published in SCIENCE journal, which is the most reputable journal to be published in the world, and backed up by one of the world most reputable retrovirologist John Coffin. Dr Peterson has been through thick and thin with CFS from the early 1980's when an outbreak declared itself in Incline Vilage, Nevada. The Whittemore family have been funding the institute WITHOUT governmental funding t al, all that to improve the lhealth of their fdaughter but also to the benefit of all the patients with CFS, and other neuro-immune disease.

VIP DX has put the XMRV/XAND test out because patients requested it. They want to know, and want to be validated for various reasons. And VIPDX publicly stated that the proceeds to this test will return to WPI research efforts.

May the UK study be dissected seriously for it is flawed, and may a big spotlight shine on WPI for their efforts and great results that could change the lives of thousands of people.

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40. KFG on January 9, 2010 10:29 AM writes...

XMRV was found in one Prostate Cancer patient and one Healthy Control in a 2008 German study, so the virus is known to be present in Europe (J Clin Virol. 2008 Nov;43(3):277-83. Epub 2008 Sep 27.Prevalence of human gammaretrovirus XMRV in sporadic prostate cancer.
Fischer N, Hellwinkel O, Schulz C, Chun FK, Huland H, Aepfelbacher M, Schlomm T.
Institute for Medical Microbiology and Virology, University Medical Center Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany.) Previous posts are correct in that careers and large sums of money are at stake on both sides of this argument. The truth is that Lomabardi et al are being taken on trust at present. With regard to Dr Wessley - his patients are selected with different criteria than those used for the 'Science' study. As anyone who knows anything about "CFS" research is aware, patient selection is critical. For this reason, the PLOS study is, unfortunately, rendered meaningless by the patient selection. It's well worth pointing out that the subsequent virology work is likely to be quite correct - but what illnesses did those patients have? This is definitely an opportunity missed, but plenty of publicity for Dr. Wessley, once again.

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41. retread on January 9, 2010 11:23 AM writes...

Mark Elliott -- I wasn't implying that the original study didn't use controls (which they certainly did), but that future studies should also include them.

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42. Anonymous on January 9, 2010 11:53 AM writes...

qetzal- #8, are you sure about the following?-

"In fact, the paper doesn't say whether the positive control was in water, buffer, spiked into patient DNA, or what. But in the comments on PLoS ONE, one of the authors confirms that the positive control WAS spiked into patient DNA."

I'm by no means a retrovirologist or have any scientific training, but isn't the criticism by Dr. Miller that the positive control was not spiked into patient DNA but should have been, with Dr. McClure(author) going so far as to do another test over the weekend with spiked DNA in order to satisfy the criticism?

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43. gahdah on January 9, 2010 12:38 PM writes...

The WPI press release was heavily worded, but people need to understand what a long history CFS has of politicised quackery. The WPI was set up by the parents of a CFS patient, and I think it's quite possible they're more emotionally invested than is normal for a scientific enterprise - you'd also think they'd be less likely to intentionally profiteer off a bogus test. The involvement of Simon Wessely in the British study, who is something of a hate-figure for many with CFS, only would have further heightened tensions.

For people unaware of this history, the WPI press-release may seem nasty and defensive. But CFS research has historicaly been (sadly) a political fight rather than a scientific one, and it's not surprising some of the old animosity has carried over.

Further replication studies are coming, and then we'll have a better idea as to what is going on. Til then, I'm holding off all judgement.

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44. qetzal on January 9, 2010 2:39 PM writes...

Anonymous #42:

Look at this comment and the subsequent reply posted to PLoS ONE.

Briefly, Dusty Miller questions the sensitivity of the author's PCR test for XMRV. Co-author M. McClure responds as follows:

We state that we were able to detect a single copy of XMRV in patient DNA. [emphasis added]

In fact, I can't find a statement in the paper that the control was spiked into patient DNA. They only state that "both primer sets (XMRV, MLV) were able to amplify a single target copy added to the reaction," without clarifying whether the reaction also contained patient DNA. But if we accept Dr. McClure's clarifying comment, that refutes the WPI PR claim that they used "molecular plasmid control in water."

The additional study that McClure promised to conduct "asap" was to spike XMRV infected cells into blood (rather than spiking pure XMRV DNA into purified patient DNA). Then they would extract total DNA from the spiked blood. That would test the possibility that the DNA extraction process somehow interfered with XMRV detection. I agree that's a excellent control to run, and I applaud McClure for offering to run it.

@gadah #43:

I guess I'm not surprised to hear that this is an emotional area, or that there might be previous bad blood. If anything, though, I think that reinforces the possibility that either side might be letting their bias run away with them. Not that WPI would try to intentionally profiteer off a bogus test. I don't think that at all. I'm quite sure they strongly believe in their results.

However, because this appears to be such a contentious and emotional area, that MAY make the WPI researchers "excessively" committed to their prior results, to the point that they're unable to see or acknowledge any possible short-comings that their study may have. (Which isn't to say that their study DOES have short-comings, or that it's more likely to be wrong than the latest study. Only that the possibility for bias clearly exists.)

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45. gahdah on January 9, 2010 6:39 PM writes...

@ qetzal: I think you need to be passionate about CFS to be doing research in this field. There's no money, you're not going to be able to do much to help a lot of your patients, and there's almost no solid science to be getting on with. This does mean that researchers are more likely to let their own beliefs affect their work and the way they present it though.

I also think that Dr Peterson at the WPI has a particlar dislike for those promoting a primarily psychological explanation for CFS as he's being working with some of the most seriously ill patients, with clear biological abnormalities, who are being told by others that they're just depressed and don't realise it. The desire to avoid having patients 'medicalise' their symptoms means that some psychologists are disapproving of potential biological explanations and even investigations as inherently unhelpful. A paper Wessely wrote claimed "the belief that symptoms are due to a persistent viral infection of muscle may or may not be true but more importantly is clinically unhelpful."

CFS research is a backwater best avoided. Those promoting biological and psychological exaplanations both seem sketchy to me. It seems that you need to be slightly unhinged to be working on it.

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46. Hip on January 9, 2010 7:49 PM writes...

qetzal, in reply to your comment about bias:

You really need to do some research in into Simon Wessely: Why don't you Google search the "Wessely School".

He and his powerful psychiatric network have, for two decades, pushing their agenda concerning the doctrine that CFS is all in the mind.

They have already decided that this is their truth, and they are quite ingenuous in the way they manipulate government departments to align to this doctrine.

I am not here to convince anyone, but I suggest that you do do some background research on the Wessely School.


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47. qetzal on January 9, 2010 7:57 PM writes...

Hip,

I fear you're still not reading what I'm writing. Either that, or I'm doing a terrible job communicating.

I'm perfectly willing to believe that Wessely might be biased. My point is, and has been all along, that WPI might well be biased too.

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48. Smurf on January 10, 2010 5:12 AM writes...

Thank you to all for a good discussion and being patient and polite with the perhaps non-scientifically educated patients who also show up here.

I would like to point out that the patient selection as described in both papers were very different.

Here is the WPI patient selection (in supplementary materials):

"Patient samples. Banked samples were selected for this study from patients fulfilling the 1994 CDC Fukuda Criteria for Chronic Fatigue Syndrome (S1) and the 2003 Canadian Consensus Criteria for Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) and presenting with severe disability. Samples were selected from several regions of the United States where outbreaks of CFS had been documented (S2). These are patients that have been seen in private medical practices, and their diagnosis of CFS is based upon prolonged disabling fatigue and the presence of cognitive deficits and reproducible immunological abnormalities. These included but were not limited to perturbations of the 2-5A synthetase/RNase L antiviral pathway, low natural killer cell cytotoxicity (as measured by standard diagnostic assays), and elevated cytokines particularly interleukin-6 and interleukin-8. In addition to these immunological abnormalities, the patients characteristically demonstrated impaired exercise performance with extremely low VO2 max measured on stress testing. The patients had been seen over a prolonged period of time and multiple longitudinal observations of the clinical and laboratory abnormalities had been documented."

Here is the UK study patient selection:

"All patients had undergone medical screening to exclude detectable organic illness, including a minimum of physical examination, urinalysis, full blood count, urea and electrolytes, thyroid function tests, liver function tests, 9 a.m. cortisol and ESR. Patients were interviewed using a semi-structured interview for CFS [9] to determine whether they met international consensus criteria for CFS. All subjects met the CDC criteria [10]; patients with the Fukuda-specified exclusionary psychiatric disorders, or somatisation disorder (as per DSM-IV), were not included."

Do these sound the same to you? The Canadian Consensus Criteria is more stringent than the Fukuda Criteria. The UK study did not use nor even mention the Canadian Consensus Criteria. The WPI used both the Canadian Consensus and Fukuda criteria.

In addition, the WPI mentions several specific criteria: "reproducible immunological abnormalities. These included but were not limited to perturbations of the 2-5A synthetase/RNase L antiviral pathway, low natural killer cell cytotoxicity (as measured by standard diagnostic assays), and elevated cytokines particularly interleukin-6 and interleukin-8. In addition to these immunological abnormalities, the patients characteristically demonstrated impaired exercise performance with extremely low VO2 max measured on stress testing."

On the other hand, in the UK study "All patients had undergone medical screening to exclude detectable organic illness." How do you reconcile the excluding detectable organic illness in the UK study with the reproducible immunological abnormalities in the WPI study? Note that the misleading term "international consensus criteria" for CFS in footnote 9 is a reference to Wessely's own paper. "International" = Wessely. I'm not even aware than anyone else even uses the Wessely-"international consensus criteria."

They are studying two groups of patients with the same name applied but as much similarity as Smurf and Smurf. The difference in results may have been set long before any sample reached a PCR.

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49. qetzal on January 10, 2010 10:17 AM writes...

Smurf,

I agree that differences in patient population could very well explain the discrepancy between the two papers. If anything, that seems a more likely explanation than the the geographical one.

One minor quibble. I think your "International = Wessely" criticism is probably off-base. Reference 9 appears to be a reference for how the "semi-structured interview for CFS" was performed. The international consensus criteria are those of the CDC, referenced in 10.

Also, I doubt that the immunological abnormalities in the WPI study would be considered organic illness. Nevertheless, the UK study didn't screen to determine if their patients had those abnormalities, which fits the conjecture that patient selection could explain the disparate results.

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50. John on January 10, 2010 10:48 AM writes...

sgcox, it's not about America vs. Europe, Science vs. PLOS, or certain and final truth. Many commentors have stated the need for further tests.

What most of the reactions that you found unappealing are probably due to are comments made by the authors of the PLOS paper at a press conference discussing it's release.

At the press conference, Prof. McClure stated that the WPI 'rushed' their results and if it were her, she would have 'waited and done things differently'. Lots of newspapers have reprinted this statement without adding any context.

However what people who have been following the situation are emphasizing is the fact that the Science paper was replicated in three different labs and underwent an especially intensive(6 months with lots of hoops to jump through) peer review prior to publication while the current paper was published online all of 3 days after submission. That this is a legitimate issue can be seen by the criticism by Dusty Miller on the PLOS website, with there being at least one easily done(Prof. McClure stated the results should be available on Monday) validation technique that the PLOS authors neglected to do in the first place. Not to mention the comment in the PLOS paper about the work not being done in labs which have handled MLV's, which could also be taken as a slight against the WPI, even though WPI sequenced their XMRV and found it to be completely distinct from lab MLV's while at the same time very similar to prostate cancer XMRV, which implied that it was not a lab contaminant or artefact.

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51. ppassionlessDrone on January 10, 2010 10:49 AM writes...

Hi Smurf -

Smurftastic explanation! Very nicely done.

- pD

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52. retread on January 10, 2010 10:57 AM writes...

Smurf #48 -- Well done. It shows the utility laying out the explicit criteria used for diagnosis in each study. In the proposal made in #35, such criteria should allow a distinction of which group of patients have XMRV (assuming that all the labs actually agree on the individual samples -- if they don't agree then there is a serious problem with the way they are doing the test or the test itself).

The question certainly should be settled one way or the other. (See Julie #37 "There are replication studies taking place all around the world and the results should be due in towards the middle of the year). I'm not sure samples are being sent between labs to see if the same results on each sample are being obtained by all -- this would be the best.

Until then, everyone should hold their fire and wait for the results.

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53. Lurker Patient on January 10, 2010 3:30 PM writes...

What most people here do not know is that the Mikovits study in Science Magazine was done on a closed population drawn from localized infectious outbreaks that occurred within certain communities in the USA. Many of the patients in those communities study have family members sick with the same illness.

There is a lot more known about CFS than most people posting here suppose, both through peer reviewed research and real clinical experience. Most peer reviewed research stems from earlier clinical evidence, suggesting there is much more known that is not yet published.

In the clinical community, including those with clinical nutritional training, there are multiple known causes of CFS. The authors (and subjects!) in the Mikovits study may be holding the rest of those with other just as real forms of CFS hostage. The authors (and some of the more vocal subjects) have been very dishonest about the multiple causes of CFS, and the existence of nutritional therapies which are proven to work for many CFS sufferers (just not those in the localized US communities having had the infectious outbreak in which XMRV has been implicated). Several of those subjects indicated/ implied to me personally that theirs is the only true CFS, caused by XMRV, and any other causes such as long-term adrenal depletion, congenital HPA-axis dysregulation, metallic toxins, EBV, etc. are not sick -- they just have "chronic fatigue " small c small f.

The UK news reports (including the Economist) have said (paraphrased) "there is no cure" for CFS -- this is really misleading because people have been successfully practicing nutritional therapies. In one sampling frame, published in the Journal of Chronic Fatigue Syndrome, 90% of CFS sufferers taking one nutritional and hormone replacement protocol in the US had significant improvement in symptoms.

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54. thewhitetiger on January 12, 2010 6:32 AM writes...

I am depressed to see so many people, who have not taken the time to read the WPI study closely, posting here.

First of all, WPI has stated that XAND should probably be considered a separate disease and that others who have CFS diagnosis could be separated out via XMRV. WPI does not believe XMRV is the cause of CFS. In fact, they seem to believe that it is, at best, a cofactor.

Second, the British study was clearly a hatchet job and worse it was ridiculously RUSHED.

The British 'team' now has no credibility with me as it is clear they wanted to publish, something, anything so as to bolster their own positions/philosophies.

As a forty year suffer of whatever CFS is, I can unequivocally state that XMRV is the only 'breakthrough' which has actually impressed me.

My illness did not originate in a cluster of CFS. However, I did have extreme EBV which gradually lead to what we now call CFS. Clearly there was an infection and clearly that initial infection damaged my system in some way.

The fact that three different labs, two of them nationally known, were part of the WPI paper is extremely important.

Of course, WPI is incensed. The founders have a daughter whose life depends on the research, whether it be done at their facility or somewhere else, going forward in the most ethical and expeditious manner.

It was easy for me to see the flaws in the British study in minutes, even without looking at the details of their methodology.

By definition, the Brits are not even testing a true CFS cohort.

Garbage in. Garbage out.

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55. Anonymous on January 12, 2010 1:07 PM writes...

XMRV is in the UK, one of the CFS sufferers tested through Biolab London early December received results yesterday from VIP and has tested positive.

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56. Gertrude on January 12, 2010 10:40 PM writes...

I read an articles and a comment on this debate this morning that pretty well confirm to me that the Imperial College cannot be trusted to give accurate testimony about their results and have already knowingly lied in their presentations to the press.

Doubt cast on new fatigue theory
http://www.google.com/hostednews/ukpress/article/ALeqM5inrHHwpLhcsS5o12h1PkCc57BaHw

Professor Myra McClure, from Imperial College London, ".... If it had been there, we would have found it. The lab in which we carried out the analysis had never housed any
of the murine (mouse/rat) leukaemia viruses related to XMRV, and we took great care to ensure
there was no contamination. We are confident that our results show there is no link between
XMRV and Chronic Fatigue Syndrome, at least in the UK."
"
McClure implies in her statement that the positive test results in the US were due to contamination. There are several facts she must have been aware of when making her statement that stongly suggest this to be untrue.
The first is that there were 2 groups in the WPI study. The first group of 100 CFS patients had a XMRV +ve by PCR rate of 67% . The second group of 200 healthy controls had a XMRV positive rate of 3.7 %.
Had the WPI results been positive because of Laboratory contamination there would have been even numbers in both groups but indeed the differences in the 2 groups were marked. The results are the strongest ever reported linking a virus to a specific illness.
Any scientist or technician would know this. That means Myra McClure is telling a deliberate lie by implication and that puts the intent and results of the Imperial College study itself into question.

The WPI samples were also tested in 3 laboratories, including that of Dr Silverman who co -discovered this virus 3 years ago in research unrelated to CFS. So the imperial College are saying they are sure the discoverers of the virus cannot test for the the virus they discovered.
Myra must have heard by this stage that WPI is testing 500 UK samples with the % ages are coming out the same as the WPI study so that blows the idea that its not in the UK.

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57. Smurf on January 13, 2010 12:27 AM writes...

qetzal,

I appreciate your response. I will relook at the criteria, however it was my understanding that the "international consensus criteria" was referring to footnote 9 while the CDC criteria (also referred to as Fukuda criteria) was referring to footnote 10. I suppose one could argue that the Canadian Consensus criteria used by the WPI is also less-used than the CDC/Fukuda, however, the point is the UK study used different official criteria from the study they are trying to refute and therefore adds too many variables.

However, I actually don't think patient selection would skew it from 67% to zero unless the UK study actually screened out something required by the WPI study.

Okay, my question is, why has there been no discussion of the fact that they used different primers? What if whatever the WPI found matches the primers used in their study but not the different primers used in the UK study? Is this possible and what could that mean?

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58. Smurf on January 13, 2010 12:35 AM writes...

P.S. I don't think we can rule out geographic differences at this point especially with the prostate cancer studies, 2 finding XMRV in U.S. and 2 not finding XMRV in Europe. For example, HIV has a 250-fold difference in prevalence rate (0.1% to 25%) among different countries. We have no idea if it could be a zoonotic event from a mouse species or insect vector in the U.S.

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59. Julieann on January 13, 2010 12:36 PM writes...

A bunch of UK sufferers have sent their blood to the US to get tested and got positive results. Hopefully, it will make the news, but maybe UK press isn't so free.

I can't believe how badly the UK head honchos have distorted the reality of what ME actually is - almost as bad as the US's CDC. They've each got an agenda, that's for sure. Are both agencies in cahoots?

The whole mess smells of rich drug companies canibalizing their fellow citizens for profit. They've been inappropriately pushing psyche drugs on us for the last two decades with the blessings of the health organizations.

I'd like to see some criminal investigation 'cause we've been screwed.

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60. Sili on January 13, 2010 7:54 PM writes...

ERV has more and harsher words for the original researchers. I gather they're responding less than professionally to this latest critique.

(A wee birdy told me a lot of you had a look at ERV the other day. Thanks! I hope you liked it. It's a somewhat different tone of voice than here, but pretty darn professional nonetheless.)

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61. CForte on January 14, 2010 10:20 AM writes...


There is already a VAST distance between the King's College researchers and WPI, both in terms of what they describe and the biological findings they have published.

Kings College's findings correlate well with those of Bill Reeves (
CDC) and Andrew Lloyd (Australian virologist who came to conceptualize CFS as a mind-body illness).

However, King's College's past clinical and biological findings do not correlate well with Nancy Klimas (U of Miami) or WPI, both of whom are finding unique immune defects that are more suggestive of a retroviral cause.

It simply makes sense to predict that Reeves and Lloyd may be the next to find no evidence of XMRV in their clinical samples. However, if Klimas finds no XMRV, then WPI has problems.

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62. KAL on January 16, 2010 10:51 AM writes...

Sili: Respectfully disagree on ERV. No citations, lots of uninformed opinion, as well as juvenile, derogatory name calling that did not move the actual professional and scientific discussion forward. There are far better informed, constructive and wide-ranging intellectual conversations that are ongoing on other blogs that are not time wasters.

One small point that ERV didn't seem to grasp.

Lombardi et al is not the equivalent of former NCI virologist Dr. Mikovats and/or the Whittemore-Peterson Institute for Neuro-Immune Disease which is on a shoestring budget.

I didn't hear any derogatory remarks about the National Cancer Institute or the Cleveland Clinic and yet they also participated in Lombardi et al. Perhaps the exclusion was because the scientists were men.

Nor about retrovirus expert John Coffin who raised legitimate questions, but overall was very interested in the work and the many directions it could go.

As Columbia University professor Dr. Racaniello noted on his blog, people need to get over their egos (and I would include bloggers in this)and focus on moving the science forward in such a way that will help people who are as sick as people with AIDS used to be.

If you recall AIDS was "discovered" long before HIV. And patients were equally stigmatized.

You don't have to know the exact cause for a disease to be legitimate.

And the lesson about stigmatization of extremely ill patients is one that professionals should have been learned long ago.

Yes, both Drs. Cleare and Wessely, have competing interests as does the WPI. Step past that and look at the science.

How can it be made better?

Obviously a better way of defining this disease needs to happen and extramural scientists who have been in the field of CFS for a very long time are working toward that.

Is a study truly replicative if they are using the same name, but not studying the same patients? Interesting, but not necessarily results that can be extrapolated to differently defined populations.

Standardization of testing protocols. In the US, Dr. Jerry Holmberg of the HHS Blood Safety Committee is working on that now with representatives from the WPI, the CDC, and the CFIDS Association among others. They will also be working from the enormous database created by the REDS study.

If you wish to know more about Dr. Wessely's professional take on patients who disagree with his as yet unproven somatization hypothesis as well as his disagreement with the germ model read the following paper. What people say publicly and what they say privately are not always the same thing.

To Whit:

Perhaps it would be best to let Dr. Wessely explain his position in his own words:

"...indeed, the search for infective causes and triggers for psychiatric disorders has never ceased..."

(note: the CFS, along with PVFS and ME, are listed by the WHO since 1992 under the ICD-10 G93.3 as an organic brain disease and are specifically excluded from a psychiatric listing)

"...it is clear that the drive to find a somatic biomarker for chronic fatigue syndrome is driven not so much by a dispassionate thirst for knowledge but more by an overwhelming desire to get rid of the psychiatrists."

Besides sounding paranoid, it is rather curious that a psychiatrist who holds the above views would be a part of viral study looking into a somatic cause for CFS. I think it legitimately falls under a competing interest.

Wessely S (2009). Surgery for the treatment of mental illness: the need to test untested theories. James Lind Library(http://www.jameslindlibrary.org).

As noted by CForte, it is widely expected that the CDC and Australian researcher Andrew Lloyd will draw the same conclusions as Erwein et al because they tend to define their populations similarly and have the same ideological viewpoint as expressed by Dr. Wessely and other adherents of George Engel's biopsychosocial model.

Neutral oversight might be a good idea when scientists are so conflicted. There has been talk about the WPI and the UK people swapping samples and doing the same work. If this were done in neutral laboratories with oversight by virologists who don't have a iron in this fire it might move things forward far more rapidly than name calling.

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63. Retread on January 16, 2010 11:56 AM writes...

" people who are as sick as people with AIDS used to be."

As a clinician I saw all sorts of horrible deaths from AIDS (when it hit the brain), but I never saw anyone die from CFS (suffer yes, but die no).

I'm sure in the 10 years since I retired there have been longitudinal studies of the morbidity and mortality of CFS (however diagnosed). What do they show?

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64. Hip on January 17, 2010 4:26 PM writes...

Don't forget the fairly recent work of Dr John Chia, who found that 82% of his chronic fatigue syndrome cohort were tested positive for enterovirus VP1 protein, compared to 20% of the controls.

There is more than just the XMRV angle on the infectious underlying causes of CFS/ME.

The sad thing is that, in the last decade or so, many common diseases, from multiple sclerosis to diabetes to cancer, are being linked to likely viral and other microbial causes.

So this era should be a watershed time in medical and scientific thinking, where the light finally dawns on us, and we realize that probably the MAJORITY of diseases have a viral / microbial underlying cause.

What is needed now is a huge investment in researching, and hopefully eradicating, a whole array of diseases caused by microbial infection, not just CFS/ME.

It would be far more efficient for CFS/ME researchers to team up with MS researches, diabetes researchers etc, in trying to figure out how to tackle and eradicate the underlying microbial infections, and not just palliate the symptoms.

Similarly, perhaps people with CFS should not isolate themselves from people with MS, diabetes, or any other microbially-casued disease, in their fight to bring to this understanding to politicians, and to the many doctors that are in the scientific dark.

We need to create larger, "cross-disease" advocacy groups that impress upon the relevant decision makers that A GREAT MANY DISEASES ARE LIKELY DUE TO A HIDDEN UNDERLYING CHRONIC INFECTION.

Only a very small budget is a present generally allocated to infectious disease research, compared to the money that goes into drug research, and into other areas of medical research. THIS MUST CHANGE! We need to fight the causes of disease AT SOURCE - that is, the viruses, bacteria, parasites, etc themselves. Then, in the long term, the huge healthcare costs that nations currently bear would fall dramatically, as these diseases are eliminated, and better human health emerges all round.

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65. Lisa M on January 19, 2010 3:13 AM writes...

OK, I only waded through about the first fifteen comments before exploding. After having calmed down (a bit) I wrote and re-wrote this comment. I am still so incredibly frustrated, as a (non-science) professional who has been completely sidelined by what is still called Fibromyalgia. Can't we all "just get along?" How about I agree that you guys can call it whatever the f---you want, but you agree to stop arguing over which study design is more valid, or which came first, the chicken or the egg, and spend your energy improving your own approach instead of knocking someone else's. Because, um, we patients? We're supposed to benefit from this. And btw --we are adults who ought to be allowed to assess risk, give informed consent, and gain access to all treatments, even those that haven't been fully proven.

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66. KAL on January 19, 2010 10:13 AM writes...

HIP - You make some excellent and IMHO pertinent points.

Dr. Dharam Ablashi, who co-discovered HHV-6, believes that there is a form of synergy when many viruses are active in one patient. A retrovirus kicks up latent viruses and the addition of HHV-6A to the mix might correlate with severity as research shows the addition of this virus to Burkitt's Lymphoma is like pouring gasoline on a bonfire.

HHV-6A, not the ubiquitous HHV-6B which causes roseola, has also been found in atypical MS patients as well as CFS patients.

Retread: Sorry, should have qualified that one a little better.

When the outbreak in Tahoe happened several decades ago, one of the physicians (internal medicine) who saw hundreds of patients noted at the time that patients were as sick as patients with AIDS prior to the final two months. (In today's world with anti-virals in place it is much different for such patients of course.)

On October 15, 2009 in a NYT Q&A,CFS expert and researcher Dr. Nancy Klimas gave the following answer to a question asking about the comparison between HIV and CFS.

She replied, "I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."

Retread, you are of course correct that AIDS patients died comparatively rapidly from AIDS-related illness. Deaths in CFS patients are not tracked nearly so effectively. However, they do die in much the same way - just not as rapidly.

The three leading causes of death in CFS are cancer (often virally associated cancers), heart complications and suicide (stigmatization most likely plays a part in this along with a complete lack of hope.) Patients generally die about two decades sooner than is common in the general population.

Jason, L; Corradi K; Gress S; Williams S; Torres-Harding, S Causes of Death Among Patients with Chronic Fatigue Syndrome
Health Care for Women International, 27:615–626, 2006

I hope this helps a little.

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67. Hip on January 20, 2010 12:59 AM writes...

Hi KAL

Similarly, I have read that Dr Robert Gallo, who co-discovered HIV, believes that HHV-6A is playing a part in the pathogenesis of AIDS.

Very interesting article on "Causes of Death Among Patients with Chronic Fatigue Syndrome".

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68. jdel on January 20, 2010 12:25 PM writes...

here is an interesting study i got from pubmed.

J Virol. 2010 Feb;84(3):1648-51. Epub 2009 Nov 11.

Androgen stimulates transcription and replication of xenotropic murine leukemia virus-related virus.
Dong B, Silverman RH.

Department of Cancer Biology, Lerner Research Institute, Cleveland Clinic, 9500 Euclid Avenue, Cleveland, Ohio 44195, USA.

Xenotropic murine leukemia virus-related virus (XMRV) is a gammaretrovirus originally identified in a subset of prostate cancer patients. Because androgens stimulate prostate tumors and some retroviruses, we investigated the effects of dihydrotestosterone (DHT) on XMRV transcription and replication. Transcription from the XMRV U3 region was stimulated up to 2-fold by DHT, but only in cells containing a functional androgen receptor. Mutations in the glucocorticoid response element (GRE) of XMRV impaired basal transcription and androgen responsiveness. Furthermore, DHT stimulated XMRV replication 3-fold, whereas androgen inhibitors (casodex and flutamide) suppressed viral growth up to 3-fold. Findings suggest that integration of the XMRV long terminal repeat (LTR) into host DNA could impart androgen stimulation on cellular genes.

PMID: 19906923 [PubMed - in process]


Publication Types, Grant SupportPublication Types:
Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't
Grant Support:
CA103943/CA/NCI NIH HHS/United States
LinkOut - more resourcesFull Text Sources:
HighWire Press

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69. Keith on January 20, 2010 12:29 PM writes...

What kind of a retroviral Study has a Psychiatrist recruiting the patients for the study? That in itself makes the UK study seem odd to me.
How can no XMRV be found at all in the UK study and German studies when the Japanese are finding it in poulation samples at about 2%. The American are finding it in control samples at about 4%.
If I were a betting man I would say the UK study did not look for XMRV in a way in which it could be found.

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70. Keith on January 20, 2010 9:12 PM writes...

Retread
A doctor Leanord Jason has done one such longitudinal study about life expectancy with CFS patients. He found that on average we pass 20 years sooner than healthy individuals. I believe the average age was around 59. So don't think this just affects our quality of life.

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71. sgcox on January 21, 2010 4:56 AM writes...

Not totally relevant to this discussion, but appaerntly quite a few CFS sufferers read these comments so it might be of interest:

http://www.citizen.org/publications/release.cfm?ID=7723

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72. jdel on January 21, 2010 2:12 PM writes...

I just ordered the test from VipDx, it cost $450.00 and its a six week waiting list to recieve
test... Alot of people must be buying it.
I suffered from cfs for six years and my symtoms get worse every years.

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73. Panch0 on January 21, 2010 3:01 PM writes...

Now that CFS gets so much attention (and comments here) it seems it is not that neglected any more? I am optimistic - in 2 years time there will be a definitive diagnostic test (to start with).

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74. Exhaustion Explained on January 22, 2010 8:07 AM writes...

Retrovirus-Mediated Coombs-Negative Hemolytic Anemia in CFS/ME

Chronic Retrovirus-Mediated Coombs-Negative Severe Hemolytic Anemia may explain Chronic Extreme Exhaustion in CFS/ME. Hemolytic Anemia is excessive destruction of red blood cells. I will try to explain what I have said there in the title of my contribution.

Firstly, it is important to know that CFS/ME has been associated with XMRV. Secondly, XMRV has been associated with MuLV (Murine Leukemia Virus). Thirdly, XMRV, MuLV, HTLV-1 and HIV are all retroviruses. Fourthly and most importantly, Retroviruses have been associated with Hemolytic Anemia: Breakdown of Red Blood Cells (RBCs), also known as Erythrocytes. Fifthly, in the search of a diagnosis for CFS/ME, I stumbled upon a disease called Wilson disease. A widely respected neurologist thought I might have Wilson disease, because my ceruloplasmin and ceruloplasmin-bound copper levels in the blood were rather low : reduced ceruloplasmin levels and raised non-ceruloplasmin-bound copper levels. After quite some time, it turned out that I did not have Wilson disease, because I had it all checked out with a genetician.

Nevertheless, I seemed to have quite a deal of things in common with people who have Wilson disease. One of these things is that I seem to have "Coombs-negative intravascular hemolysis" or "Coombs-negative immune hemolytic anemia", or "Coombs' test-negative hemolytic anemia", or "Severe hemolytic anemia with a negative Coombs' test". Acute hemolytic anemia is found in Wilson's disease : Coombs-Negative Hemolytic Anemia is a recognized but rare (10-15%) complication of Wilson Disease. But also in people with human T-lymphotrophic virus 1 (HTLV-1) retrovirus, you will find Coombs-negative hemolytic anemia. So, Coombs-negative acute or chronic hemolytic anemia seems to be retrovirus-mediated. High urine copper levels were first thought to be unique to Wilson's disease, but it is also found in cancer, and now there is a growing body of evidence that this problem also seems to be present in CFS/ME.

In MuLV retroviruses the amount of vascular endothelial growth factor (VEGF) is known to be increased, and as CFS/ME will turn out to be a MuLV-related disease, I can now truely say that there seems to be a high-level of constant compensation going on in CFS/ME for the shortage of red blood cells, so that regular blood tests in CFS/ME will never show a shortage of red blood cells : during the initial stages of CFS/ME even quite to the contrary. Why should that be the case ? In CFS/ME hemolytic anemia is a hidden problem, that you have to discover by a lot of good thinking ! The amount of vascular endothelial growth factor (VEGF) is increased in CFS/ME. VEGF is undoubtedly increased in CFS/ME in order to constantly save the patient's life. VEGF stimulates the generation of red blood cells : VEGF stimulates erythropoiesis. A CFS/ME individual is constantly fighting for his life.

But increased VEGF or upregulation of VEGF is also known to be associated with neurodegeneration in MuLV. So there is constant fighting against neurodegeneration going on, and that's most probably part of all the exhaustion being experienced in CFS/ME.

So a lot of red blood cells are constantly being destroyed in CFS/ME, resulting in copper being released from the red blood cells into the urine which is frequently shown in high urine copper levels, not at a same "beautiful" constant level as in Wilson disease, but more in a waxing and waning way, which is why people with CFS/ME are chronically extremely fatigued and exhausted in the same waxing and waning way.

And in CFS/ME there is not only this problem with red blood cells, but there is also this problem with neutrophils (a type of white blood cells), because these neutrophils are being recruited especially to areas of infection and inflammation in the brain and the spinal cord, and also to areas of infection and inflammation in the Gastrointestinal (GI) Tract, such as stomach and intestines.

In order to compensate for all this retrovirus-induced loss of red blood cells and white blood cells (neutrophils), there is a chronic necessity for the production of new red blood cells and new white blood cells (especially neutrophils). All of these cells have to be newly produced at a much quicker rate than normally should have been the case in "normal" everyday human individuals, who are not infected with this Xenotropic MuLV-related retrovirus (XMRV), and who do not have such a debilitating disease such as is the case with CFS/ME. The result of all this, is that people with CFS/ME are chronically dehydrated, because there are often times when there is too much presence at the same time of not only the "old destroyed" blood cells, but also the "newly produced" blood cells, making the CFS/ME bodily environment overcrowded with blood cells, new ones and old ones all at the same time, resulting in a chronic dehydration, which is a hellish experience, you never get quite used to.

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75. Kevin Wilson on January 23, 2010 8:15 AM writes...

Finally, after 27 years of this disease waxing and waning in my system, there seems to be a breakthrough.
Lets strongly consider the possibility of geography in the difference in the UK/USA XMRV presenece in CFS and can someone research that angle pretty quickly rather than wasting time arguing.
I write this trapped in a body that can only walk 10 meteres at most before falling over- and all the science in the world still can't sort out why.......but hopefully you are getting there......hurry up !

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76. jdel on January 27, 2010 9:52 AM writes...

Hi exhaustion explained.

excelent post.
Your explaination makes alot of sense, I always feel like i have a hangover or flu.What would you recommend for the chronic dehydration suffered from cfs?

I will try drinking 8 large glasses of water a day and see how i feel, anything else you recommed?

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77. Someone with Asperger's & CFS/ME on January 27, 2010 8:31 PM writes...

XMRV infection may be due to a deficiency in antiretroviral activity of proteins

What all people with XMRV infection may have in common is that they all may have an overlooked M-A1AT deficiency, which means that they have too much of the pathogenic Z-A1AT protein and too little of the normal M-A1AT protein. M-A1AT deficiency is a seriously underdiagnosed condition ! M-A1AT has been scientifically proven to be effective against a retrovirus as bad as HIV-1, so chances are that it will also be effective against XMRV, and therefore M-A1AT is most probably going to be the answer in the fight against XMRV & CFS/ME. People with XMRV clearly have too little antiretroviral activity protein in their blood, caused by too much of the pathogenic Z-A1AT protein and too little of the normal M-A1AT protein. In prostate cancer caused by XMRV, the problem there is the presence of the pathogenic protein R462Q, which has most probably a comparable effect as Z-A1AT : far too little of the normal protein, and far too much of the bad protein R462Q (RNase L).

Both R462Q and Z-A1AT will cause you to have too much pathogenic proteins and too little normal antiretroviral protein activity. Homozygosity for either Z-A1AT or R462Q may cause cancer. Homozygosity means that you have inherited a bad copy from both your father and your mother. Heterozygosity means that you have inherited a bad copy from either your father or your mother, and that you have one normal copy, which may protect you from getting cancer, but merely having that one normal copy may not protect you enough from getting CFS/ME in case of XMRV infection. Both Z-A1AT and R462Q may get help from C282Y. When you are homozygous for C282Y, this may cause cancer too, but heterozygosity for C282Y on its own is not always enough to cause disease, except in the presence of other bad guys such as either Z-A1AT or R462Q. Furthermore, C282Y in the presence of both Z-A1AT and R462Q, all three together even in a heterozygous state, is a big risk factor for getting either CFS/ME or prostate cancer. Z-A1AT has been associated with neurodegeneration. R462Q has been associated with prostate cancer. C282Y in a heterozygous state is considered to be a disease modifier.

http://www.psychologytoday.com/blog/complementary-medicine/201001/xmrv-controversy-heats-two-important-new-studies/comments

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78. Julie on January 28, 2010 11:22 AM writes...

Dr Mikovits from the WPI gave a lecture and Q&A on the 22nd January 2010 on the science behind and how they found XMRV, what it is, what they want to find out next. That the original study published in Science infact included sufferers from 17 States of the US, the UK, Australia and I can't remember the rest!! There is a link to it from www.wpinstitute.org. It is very long but very very science detailed. I am not from a science background..I am a sufferer, but maybe it would be worth everyone who has posted here taking a look. Thank you.

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79. Anonymous on February 3, 2010 3:12 AM writes...

quetzal #44,

I don't know if you'll come across this because it's been so long, but I think you're mistaken about the following-

"The additional study that McClure promised to conduct "asap" was to spike XMRV infected cells into blood (rather than spiking pure XMRV DNA into purified patient DNA). Then they would extract total DNA from the spiked blood. That would test the possibility that the DNA extraction process somehow interfered with XMRV detection. I agree that's a excellent control to run, and I applaud McClure for offering to run it."

Although the original criticism by Dusty Miller was that the PLoS group should have done both steps you describe, ie spike both the already extracted DNA as well as taking the further step of spiking the blood and then extracting total DNA, Prof. McClure stated that her group was only able(or willing) to spike pure XMRV DNA into the already extracted patient DNA, and was not able(or willing) to spike patient blood and then extract total DNA due to their samples being pre-prepared, ie the patient DNA being pre-extracted by King's.

Since they did not have whole blood the Imperial group was only able to do part of the experiment you describe, although I agree it does sound like it would have been a good control to run.

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80. Someone with Asperger's & CFS/ME on February 9, 2010 1:27 PM writes...

----------------------------------------------------------------------------------------------------

XMRV-seropositivity and hyperserotonemia in nearly 40% of autism and nearly 100% of CFS/ME
XMRV-seropositivity and hyperserotonemia in nearly 40% of autism and nearly 100% of CFS/ME
XMRV-seropositivity and hyperserotonemia in nearly 40% of autism and nearly 100% of CFS/ME

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Abnormally high levels of serotonin in those infected with XMRV

Having a strong inclination for hyperserotonemia may be the hallmark of infection with XMRV.

----------------------------------------------------------------------------------------------------

General Conclusion

----------------------------------------------------------------------------------------------------

High levels of serotonin have been found in about 40 percent of children with autism, and XMRV has also been found in about 40 percent of children with autism.

High levels of serotonin have also been found in CFS/ME. XMRV has been found in nearly 100 percent of those who had CFS/ME. Logical conclusion should be that XMRV has the potential to not only cause autism in children, but also CFS/ME in both children and adults.

Abnormally high levels of serotonin may be the hallmark of an infection with XMRV.

These abnormally high levels of serotonin may not always be observed, but the potential to easily reach these extremely high levels of serotonin under the influence of an external factor such as a superimposed viral infection or certain types of pharmaceutical agents should be expected to be present in each individual infected with XMRV.

----------------------------------------------------------------------------------------------------

approximately 40% of children with autistic features have hyperserotonemia

approximately 40% of children with autistic features have XMRV-seropositivity

CFS/ME => hyperserotonemia

nearly 100 percent of CFS/ME patients have XMRV-seropositivity


----------------------------------------------------------------------------------------------------

Having a strong inclination for hyperserotonemia may be the hallmark of infection with XMRV.

----------------------------------------------------------------------------------------------------

Literature

http://www.psychologytoday.com/blog/complementary-medicine/201001/xmrv-controversy-heats-two-important-new-studies/comments?page=2

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81. Someone with Asperger's & CFS/ME on February 17, 2010 6:20 AM writes...

James Joyce may have died due to coinfection with XMRV and CMV.

James Joyce (1882-1941) was an Irish writer born in Dublin. James Joyce died in Zurich at the age of 58 most probably due to coinfection with XMRV and CMV. James Joyce may have died due to an immune deficiency syndrome caused by coinfection with XMRV and human cytomegalovirus (CMV, HHV-5). James Joyce died half-blind due to CMV retinitis and CMV gastric ulcer. His cytomegalovirus (CMV) disease was exacerbated and, in addition to his preexisting CMV retinitis, a CMV stomach ulcer was diagnosed. But at the time no mention was made of CMV, because human CMV strains were isolated no earlier than in 1956, and in 1960 the term "cytomegalovirus" was proposed. James Joyce is considered to have had Asperger Syndrome in a book on autism written by Professor Michael Fitzgerald. Asperger Syndrome is an autism spectrum disorder. 40% of those with autism may show evidence of XMRV infection. CMV will do no harm to most people, unless you have an immune deficiency syndrome, such as one caused by XMRV infection. CMV has now become one of the most common opportunistic pathogens encountered in immunocompromised patients. All of the previous is evidence for the fact that the American study by Lombardi et al., published in Science, on 23 October 2009, under the title "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome" is 100% at the right side of history.

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82. Someone with Asperger's & CFS/ME on February 17, 2010 10:57 AM writes...

Lombardi et al. and Being on the 'Right Side of History.

The American XMRV Study and the "Good Men and Women," Always "On The Right Side Of History".

The American XMRV Study and Being on the 'Right Side of History' : All of the previous here above is evidence for the fact that the American study by Lombardi et al., published in Science, on 23 October 2009, under the title "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome" is 100% ON the right side of history.

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83. Julie on March 2, 2010 4:35 PM writes...

I first posted on this site 9th January (no. 37), I am CFS/ME sufferer of 18 months now and just thought I would update you how things have changed personally for me since that date. I did make a couple of other posts too but not sure I always managed to put my name to them! I am resident in the UK but had my blood tested by VIP Dx in Reno...I found out last week that I am XMRV positive. When I first posted on this site it was all theory...now it is reality. Because of my personal results I do believe that XMRV will turn out to be the cause of CFS/ME though I will let you scientists fight that out. We just have to wait for good science and that takes time. I will be interested to see what the story is like in another couple of months time...watch this space! What I am worried about is the blood banks..in the UK I could give blood tomorrow if I said that I had overcome ME though I am not sure what the circumstances are in the US. Please please will someone try and do something about this, please protect others from catching this serious neuroimmune disease.

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84. Realist on March 9, 2010 2:03 AM writes...

That science now has an indecent fascination with retroviruses sporned from the junk science of HIV/AIDS research is truly saddening.

Firstly remember Koch's postulates, in that for a microbe to be the cause of a disease it must be found in 100% of the disease cases. A 40-50 or 60% correlation does not prove causation by the organism.

In retrovirology 60% is taken as good enough and has been used to sell the idea that HPV causes cervical cancer and others are being claimed to cause Type 1 diabetes and even Obesity.

What drives this is the pharma industry looking for increasing markets with more and more disease states to pedal junk tests, ineffective vaccines and toxic anti retroviral drugs. I applaud the English in this case for coming straight out and saying "crap", it is a shame more have not done the same with the other pseudo viruses now in common circulation.

The fact that WPI make an announcement right on the back of a 600 buck test is the best indicator of their lack of credibility. There's money to be made and they'll do anything to make it.

To suggest that English PCR is inferior to US PCR or that English CF patients are any less affected than their US counterparts is downright insulting and ignorant. They use the same machines and same primers and CF is CF no matter where on the planet you are suffering it.

Everyone has lost track of the science especially in the field of retrovirology. If you want to educate yourself perhaps look up the books Fear of the Invisible or Virus Mania for some decent explanations. But for pities sake please don't start taking the drugs prescribed for retroviral infections that have directly killed more than 500,000 americans that were diagosed with HIV.

This all has a tremendous sense of Dejavu and you'll find the defenders of WPI on this blog invariably have linkages to pharmaceutical companies.

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85. Julie on March 12, 2010 2:37 PM writes...

@Realist, the real pity is that you have not done your research. The WPI is a non profit making organisation, VIP Dx who is conducting the testing have stated that any profit made from testing for XMRV will be given directly to the WPI. Infact the VIP Dx is itself put into trust for the WPI which is I repeat a non profit making organisation. This science is actually 'sporned' from the fact that XMRV is found in of a virilant type of prostate cancer. The WPI was peer reviewed for 6 months, replicated in 3 separate labs and published in Science, this does not prove a cause but suggests a link. 95% of CFS sufferers within the study were found also to have XMRV. The Canadian Criteria is actually much stricter than the Oxford Criteria and the Fuduka criteria and it does make a difference. None of the 3 subsequent studies used the techniques founded by the WPI to find XMRV, neither did they I understand contact the WPI or carried out the full range of testing methods specifically used by the WPI, none of the 3 studies validated their tests against CFS/ME patients known to have XMRV across the world including the United Kingdom. We are awaiting the results from the other respected scientists worldwide who have liaised with the WPI and have true replication studies underway. If you ever need a blood transfusion at anytime please feel free to let me know and I will gladly give you some of mine!

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86. Simon Says... on March 12, 2010 9:36 PM writes...

Realist doesn't realize that Wessely-et. al., pushers of the U.K.'s NICE/GET psychiatric clinics and psychosomatic basis of "CFS," are Big Pharma's best friends - just a different category of drugs. As for using a PR agency: what medical journals (Science included) haven't become a PR tool of government and drug companies? Who's hiring all those ghost-writers?

There are biases and monetary conflicts of interest on both sides. The important thing is who in this ugly scenario will ultimately help the patients. We don't know whether XMRV and retrovirals will be the answer; AZTs are hardly benign. But WPI-NCI-CC have gotten people focused and looking again at the disease beyond the useless labels with intent on vanquishing both. The CDC and health ministries of numerous other countries have stalled for a quarter century and are bent, for whatever reasons, on continuing to do so. Given 25 years of official hostility, it's fine by most of us that WPI exerted their patent rights and is careful how much they share with whom and when. We're not interested in U.S. or foreign psychiatrists or insurance companies having the last word. And $600, many people don't realize, is a pittance compared to what most of us are still losing. If somehow this helps lead us out of the quagmire with more quality years of life, Lombardi-et.al. can even skim off enough milk to drown themselves.

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87. Rebecca on April 24, 2010 8:03 AM writes...

When HIV was first discovered wasn't it accepted for a while that it was a herpes virus because a prominent pathologist came up with that conclusion? I recall the doctor who figured out that HIV was a retro-virus had to go up against this other doctor and ego's clashed. I believe accurate testing for the HIV virus would have come out sooner if they could have got along and collaberated their work.

My son, my husband, and I have CFS/FMS. My hope is that another study is done using the Canadian criterea for symptoms of CFS and using the exact XMRV testing procedure(s) that Whitmore Peterson used to detect the XMRetrovivus. (Further, the research should not exclude anyone with slightly elevated anti-nuclear antibodies. It is my understanding that it is common to find some anti-nuclear antibodies in CFS patients. My son and I both have them and have had every other auto-immune disorder tested for. We tested negative for all of them.)

Once another research group does this, I will be satisfied that there is no causal connection between CFS and XMRV.

Sorry for the spelling.

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88. Rebecca on April 24, 2010 8:32 AM writes...

Rebecca again. I have a question for exhaustion explained. I just read your post. I have a problem with having a lot of "young blood cells." Particularly red blood cells and a type of white blood cell. (I can't remember the name of the white blood cell. I think it was wither T-Cells or B-Cells). My doctor was stumped be this. Is this the type of thing you are describing in your post?

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89. fulltimeworkerwithME-CFS on June 2, 2010 11:26 PM writes...

All I gotta say is if you work fulltime, 40 hours a week, with CFS, like I do, you're grateful that *anyone* is looking into this matter.

Let the debate rage, but groups that label ME/CFS as a purely psychological illness deserve a chocolate milkshake thrown at them.

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90. judson on June 17, 2010 8:46 PM writes...

Did anybody notice that a recent study IN GERMANY found XMRV in the the healthy population and respiratory tracts of immuno compromised individuals???

Turns out the only geographic part of this mystery is how the Germans keep using such crappy pcr technology.

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91. cynical1 on June 23, 2010 12:28 PM writes...

Well, according to this report the NIH and FDA have confirmed the WPI's findings. This is pretty exciting stuff if it holds true. Well, not as exciting as photonic imprints but still pretty cool.

http://www.mmdnewswire.com/xmrv-9040.html

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92. copper on August 13, 2010 3:35 AM writes...

@Exhaustion explained.
You are on to something there. I know from personal experience. In 2007 I supplemented with 12 mg copper per day and experienced a 1 week complete remission. I had to discontinue when I began to bleed as a result. The remission dissappeared almost instantaneously. I suspect ferroxidase dysfunction or some abberant immune response to some copper based iron transport proteins. This does not rule out crossover autoimmunity from exogenous viral or other infection, past or present. As far as neurotransmitter abnormalities, or for that matter neuroendocrine abnormalities are concerned, copper and related iron metabolism dysregulation can explain both. From growth hormone to a host of neurotransmitters.
Their are at least two studies i've found linking iron metabolism irregularities with cfs/fms neuroendocrine abnormalities. I can't speak to their quality. One suggests a 6.5 fold increase in the incidence of such diseases in people with ferritin below 50ng/ml. There is a link there.

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93. Zeeky The Geek on September 23, 2011 1:26 PM writes...

Hey, I just wanted to let you know that I'm giving away my business that was making me $500-$700 a week for free. Just email me at ZellarsCaliman10341 AT gmail.com and I'll show you how I was doing it. The reason is my wife just gave birth to our son and it's time I moved on and started doing bigger things. Cheers!

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94. Cenk on December 26, 2012 10:29 PM writes...

I'm sorry to report that I've cloenudcd Marly is PANDORA, and unity is just another word for control. Independent advocates seem to threaten her. She does her best to bring them into her fold so she can control them as opposed to simply letting them do what they do best. If they do agree to work with her and give her constructive criticism about a strategy, she gets furious, slams the advocate, and stops communicating. .I should know. It happened to me. And I know of a number of other independent advocates who've had the same experience. In the name of unity , I fear indepedent advocacy is meant to be stifled.As to communication? I always thought that involved discussion among all involved, allowing for input, considering the input, and putting the best ideas together. Again, this is not what I saw happening when I was an insider . There were times when people were pressured relentlessly to agree with Marly in the name of unity and times when they were ordered to do things without any say in what was being done. Anyone who protested was told they were not a team player and usually kicked out of the club. PANDORA presents itself as a model of the type of good company Khaly describes, but that is only skin-deep. And who does PANDORA represent? From what I saw, Marly. Period. Anyone who subscribes to PANDORA's online newsletter (which is free) automatically becomes a member . But members have no say in what the organization does. Decisions are made by Marly and whichever hand-selected trusted advocates ( yes men and women) she considers appropriate for a given project. PANDORA's board members consist of Marly's friends and appear to let her do pretty much whatever pleases her.Now I will say that PANDORA has done some terrific things at the state and local level. I particularly appreciate the outreach to housebound and impoverished patients. But when it comes to national advocacy, I feel PANDORA misrepresents itself. It is no more the voice of the patient population (not even its newletter subscribers/members) than any independent advocate.

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